Tuesday, October 22, 2013

The value of a core support group

For 89 months I have fought this disease. For the first year, I did it alone. That's not to say my family wasn't there for me, My parents, my children, my wife, and for a time even my Grandparents all were there for me. Any of the aforementioned would have done anything for me at any time. Still, I was alone. It is hard to talk about terminal illness with persons who are emotionally attached. They keep crying. It is hard to talk to your wife when you are worried that you will never again have a libido. It is hard to talk about the "what if's" to your children who fall apart for days after the conversation. Cancer is a burden that in many ways must be carried alone. If you do not have a positive outlook people assume that your lack of faith is the reason you are getting sicker or that a treatment is not working. (paraphrased from a post by a healingwell member) " sorry beejane, I liked it" To express fear or doubt is to show weakness. One night during a graveyard shift that seemed like it would never end, I began surfing the web. I simply googled a question. "How long was I going to live with advanced prostate cancer?" I was not encouraged by the results of my query. I was basically learning that I should already be dead. I even called a number for a cutting edge treatment facility that said "sorry there is nothing we can do for you." .....NICE!!!
I continued to surf the web until at around 5a.m. I clicked on a website called healingwell.com. I read some of the posts and decided lurking was for cowards and signed up as a member. I again typed my question.... The replies were not what I had expected. I don't even remember what they were to be honest but it doesn't matter. My battle with cancer changed that morning. I found a place where everyone was to one degree or another, in the same boat as I. I found a place where we all shared the same fears and faced the same demons. I found a place where I could vent or rant without judgement. I could share my dreams and my struggles and not worry that those I shared with would have a breakdown. I found a group of people whom over the years have become closer in many ways than my family.
    It is this group to whom I dedicate this post. My friends and my family. To date, I have met four of them face to face. In a month I will have the privilege of meeting several more. I honestly do not believe I would be here without them. They have carried me when I could not walk. I have been there to carry the load for them as well. We are a band of brothers and we will leave no-one behind as we battle this disease. Thank you so much for being there and being my friends.

If you have a chronic disease, please find help to deal with it. Nobady should carry the burden alone,. Todd

Sunday, October 20, 2013

A little intimacy.

We just got back from the beach. Mandy and I have not been alone together in well over a month. Having a 15 year old sharing the room next door is challenging. Saturday morning we were suppose to wake up early, load the camper, buy groceries, drop off the daughter and head to the beach for a little us time and some razor clam digging.

 This is how it really went:

Good morning honey,

Good morning....... What time is it?.... I don't know, my eyes are stuck together.... hold on.... Oh crap., it is 9:15

I got the Camper thrown onto the truck in record time, threw some clothes in a backpack, grabbed the dog and we were off. We dropped off the daughter and headed to Fred Meyer for groceries. We were only an hour behind schedule. Dang it.... Mandy, we gotta go back home. Why? I left the rocket fuel in the fridge. (code name for trimix). No.... we are not going back for it. Okay, I don't think I need it.

I DIDN'T NEED IT. That comes later

We made it to the beach and ordered a pizza and bought a couple bottles of wine. The pizza would be delivered to our campsite in two hours so we took advantage of a beautiful day to ride our bikes and drink wine on the beach.
What a wonderful time together. We rode and laughed and drank and laughed some more. At times we laughed until the tears ran down our cheeks. The pizza came at 5:30 and it was so delicious. After that we went clamming and then for a sunset walk on the beach. I have included a few pics.
This was our campsite
 Walking through the tide-pools at the hollow
It was an amazing sunset. We held hands and walked together. There was no place either of us would have rather been. After sunset we returned to our campsite for more wine, a warm campfire and a heated game of cribbage..... Mandy won....
By the time 10 o'clock rolled around we were exhausted. I don't remember my head hitting the pillow. Neither does Mandy.

We had to wait until this morning for "us" time. After that we rode bicycles along the beach for 10 miles played air hockey and drank peanut butter milkshakes. It was an amazingly fun weekend that recharged our batteries.

Many of my friends have commented on my last post. To them, I say thank you. I will never give up, nor will I ever back down. Sometimes I do feel sad. Sometimes!!!

My friends are right. Mandy and I are as close as two people could ever be. This weekend much intimacy was shared, and only a small percentage of it was physical. It is our oneness that makes our togetherness so good. Even if it happens less than we would like, it is that much more special when it does.

I hope I have not gagged y'all Talk to you later, Todd

Wednesday, October 16, 2013

I don't know how to fix it

Lupron is a blessing and a curse. Combine it with Zytiga and it is even more so.
   I love my wife. She is my world
I would do anything for her. I am failing and I have no idea how to fix it.
   I participate in an online forum for prostate cancer patients. We are a unique mix of men who fight this disease on many fronts. There are those who are most likely cured. They are the ones I envy the most. The talk of dealing with side effects and worry about when they are going to regain sexual function and continence.  They complain that their equipment is smaller than it use to be. Most eventually move on after recovery logging in only to annouce a normal psa or to say  hello. Some find a unique kinship with others on the board and stay to help the others who find the site at a very scary time in their lives.
   There is also a group of caregivers who are rocks. (it is not just men who find the board) They are amazing in courage and strength.
   There are older gentleman who have non aggressive cancer and have opted for watchful waiting as a treatment plan. They support each other. They are a great bunch of men.
   There are radiation guys, brachy guys, and a host of others, all fighting the beast and cheering each other on.
   I belong to the young guys with advanced disease. Surgery and radiation are not options. We get the drugs. Hormones,  Provenge,  chemo. We hope the available drugs work until a new one comes along. The word "Cure " is not part of our vocabulary.  It is something we dream about and hope for. It is Santa Clause, the Easter Bunny, an honest Lawyer, and a morally sound politician, rolled into one. We discuss treatment options, side effects, and precious time. We speak of hope.
   Most of us are on hormone therapy. We will be for the remainder of our lives. It robs us of our body hair our masculinity and most important, our sexuality.  Erectile disfunction medicine can make the equipment work but there is nothing that can replace our libido ( desire)  that will not cause the cancer to spread. It is not a big deal to us. We are like casterated dogs. Something is missing but it doesn't really bother us. It does however affect those who love us and still desire us. It is hardest on them. They are the true victims. The sex can still hapen but we men rarely think of it. It leaves our wives feeling empty,unloved, undesired. My wife is dying inside and I do not know how to fix it. At times I wish I would die so she could have a full life. Today I am sad. Todd


Saturday, October 12, 2013

Crazy busy

I haven't written in over a week. It  has not been for lack of wanting to.
Lately there hasn't been enough hours in the day. I guess the days are getting shorter. Work is keeping me really busy with a ton of overtime and our daughter has volleyball at least two nights a week.
   A lot has happened. I was okayed to begin my third month of Zytiga. Apparently my blood levels and liver functions are holding steady. My P.S.A. has fallen to 1.06. I hope to be in the zero club next month. Today I had a thought that will not let me alone. What if I am not? What if my P.S.A. goes up instead? I know the obvious. I would start Xtandi and then perhaps tak-700 but then what? Taxotere..... Jevtana..... dosataxel.
   There are times when I am uncertain about my future. Sometimes I am afraid. My overall survival depends on the effective duration of the weapons in my Prostate Cancer arsonal. The longer they work the longer I live. I hope that Provenge combined with Zytiga lasts a long time. I want to be cured. I want a cure not a treatment.  I am sick of side effects. I am tired of my wife feeling unwanted and unneeded. She deserves so much better. :-(

Wednesday, October 2, 2013

Month 88

The infusion room is full today.  Nobody speaks. Caregivers sit silent. The weight of the world can be seen in their eyes. I am filled with empathy for them. I think of Mandy. I protect her as best I can but I know it weighs heavy upon her heart..
    I drew the short straw again. My nurse has no tact. She has to have the last word on everything thus exposing her ignorance. I have no patients today. It is not her fault. She tries. I simply hate this place. Empty eyes.
     It is raining. It has been for days. This morning was cold. It feels like we never had q fall this year. Summer ended and winter began. Grey sky's.
    I am so tired today.  I could sleep if I wasn't so cold. My I.V. itches. I wish they would bring in my meds so I could get away from this place.
   It has been 88 months since my.diagnosis.  That is so amazing.

   Last night our daughters J.V. volleyball team won the first two of the three games led by the 9 kills and 3 aces our daughter made. The benched her the last game which the team lost. We were getting ready to leave when the coach told her to go get a varsity uniform. That was the coolest thing ever.  88 months..... If I had listened to the doctors I would have been dead 76 months ago. It would have been sad to miss last night due to premature death.
   I cannot stress enough. Live life outloud. Go for everyrhing. Y.O.L.O